Kevzara and Prednisone Tapering before and during Kevzara
I recently stated with Kevzara and I am interested in those who are currently on prednisone and Kevzara.
I would like to know...
1. What was your starting dosage of prednisone and how long have your been taking prednisone?
2. What was your daily dose of prednisone before Kevzara?
3. What was your prednisone tapering schedule before starting Kevzara?
4. What was your lowest dosage of prednisone before Kevzara and did you have difficulty dropping below that dose?
5. What is your tapering schedule now that you are on Kevzara?
6. How successful has this schedule been so far and have you had any flare ups?
7. What is your target date for stopping prednisone?
8. What changes have you noticed in your health, aches and energy level since starting Kevzara?
Please feel free to add any more information that might be helpful to those contemplating starting Kevzara or those currently on Kevzara
Thanks
Mike
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
I was on prednisone for about 2 months before Kevzara. Started at 15 mg. Prednisone. Due to heart issues cardiologist wants me off prednisone ASAP.
I'm wondering about tapering off prednisone when I'm on Kevzara. I've been on Kevzara for 5 months and have tapered prednisone from 12 mg to 3.5 in that time. Just got back from rheum and he want me to go to 1 mg next week and be off prednisone in 2 weeks. Based on what I've read on this site, your adrenal glands need a little time to kick in. I asked him about it (especially since it looks like so many people on this site needed to see and endocrinologist at around 3 mg. due to adrenal glads) and he said since I'm on Kevzara I should be fine and if I'm having problems go up to 5 mg. Just wanted to sound out the group. I might just be scared to reduce so quick because the two flares I had were pretty bad. I really want to get off prenisone, but not play "Cutes and Ladders".
That sounds risky to me. The Kevzara should prevent a flare of your PMR, but you could have adrenal issues by dropping from 3.5 mg down to 0 in just 3 weeks or so. I take Actemra, which is very similar to Kevzara, and my rheumatologist had me taper 1 mg every 4 weeks once I got to 5 mg. That worked very well for me. By the time I got down to 2 mg I felt like the prednisone wasn't causing any side effects.
I like to think of it like a plane landing. Do you want your plane to glide in low and slow on a long flight path, or do you want it to stop suddenly and drop to the ground from several thousand feet up?
I had a similar experience with my Rehum, except he wanted me to go from 8mg to “0”.
Not me……..I self tapered with my PCP approval.
I am at 5 months Kev now. I started my taper at 8mg, was at 3 mg by 6/15 (16 wks on Kev). I did self taper to “0” by 7/13. I did it in .5 increments.
I was having no symptoms, exercising more.
I 🛑 prednisone on 7/13.
Note: I do supplement with 2 Tylenol for Arthritis when weather is hot/humid (today total 165%) or I have overdone it. I traveled to Alaska recently and needed no supplements.
As everyone on this blog says, you do what you “feel” works for you. Good luck
Diagnosed with PMR in 2011. . Because of a flare in late fall of 24 my rheumatologist raised my prednisone. When I got to 10mg I started KEVZARA. I held at 10mg for a few weeks then tapered 1mg/week. to 3and held for a while then dropped to 0. That was the first of June. I had also had a morning cortisol test at 3mg and I was in the normal range. After the test is when the rho rheumatologist told me to continue with the taper.
So if concerned about adrenal issues ask for a morning cortisol test.
I had the same experience with Actemra. I was instructed to stay on 3 mg when my morning cortisol level was low. An endocrinologist took control of my Prednisone taper and said I needed to stay on 3 mg for "as long as it takes" for my cortisol level to improve. I stayed on 3 mg of prednisone for 6 months for a morning cortisol level to be "adequate." After that the endocrinologist said I could drop from 3 mg to zero.
Actemra made tapering easier. I called my taper the "depends how I feel taper" because my rheumatologist said to take that approach. At first I tapered from 10 mg to 7 mg by decreasing 1 mg per month until I felt like Actemra was working.
After I reached 7 mg, I tapered by 1 mg per week from 7 mg to 3 mg because I felt cocky and wanted to get the "inevitable flare" over with.
I called going from 3 mg to zero a "countdown taper" because I dropped by 1 mg every couple of days. I went from 3 mg - 2 mg - 1 mg - zero in a week. I felt afraid to drop from 3 mg to zero all at once even though the endocrinologist said I could.
My cortisol level was adequate with no PMR pain so I took the plunge to zero Prednisone. I will leave it here because things got crazy after that.
I’ve been taking Kevzara injections since June. It has assisted me to continue reducing on Prednisone. I’m currently alternating between 2 and 3 mg daily and will go to 2 mg on October 1. I was on 3 mg in August, tried to drop to 2 on September 1 but my PMR said ‘nay’, too big of a reduction. The goal is to get off Prednisone completely and space out the Kevzara further and further.
Hang in there …..similar path, success.
Kevzara continued question…..
Could anyone tell me abt their experience tapering off Kevzara?
If you have been fortunate to get off Kevzara, how long did it take you and what was the plan?
Thx
There is no taper that is required in order to discontinue Kevzara. The dose of the injections are the same so the dose isn't gradually decreased. Sometimes the interval between injections is increased before stopping Kevzara but the dose stays the same.
I'm doing Actemra infusions. My infusion dose can be adjusted higher or lower but it has never been lowered with the intent of tapering me off Actemra. I currently do the lowest recommended monthly infusion dose of Actemra. There isn't any plan to stop my monthly infusions.
My monthly infusion was abruptly stopped once when supplies of Actemra were limited during Covid. I didn't have a sudden relapse but my symptoms gradually returned after a few months. I wouldn't call it a sudden flare or a relapse. It was more like PMR was still active when treatment with Actemra was stopped so treatment needed to be continued. In the absence of Actemra, I had to take Prednisone again. When Actemra was restarted, I was able to taper off Prednisone again rapidly in a matter of a few weeks rather than years.
I don't know how a person is supposed to differentiate between symptoms of Prednisone withdrawal and symptoms of PMR. The main reason Prednisone is tapered is because of adrenal suppression. Abruptly stopping Prednisone could result in an adrenal crisis. As scary as that sounds it is relatively rare. People usually have symptoms of Prednisone withdrawal before an adrenal crisis occurs.
Overall ... I think I'm fortunate to be able to be treated with Actema indefinitely. I don't have side effects and Actemra works much better that Prednisone ever did. Since I am currently off of Prednisone, my adrenal function has been restored which makes my life much better.